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Universitat Internacional
de Catalunya
El sufrimiento al
final de la vida y el
deseo de adelantar
la muerte
Cristina Monforte
Càtedra WeCare 3er Workshop Internacional Càtedra WeCare
Universitat Internacional
de Catalunya
Cristina Monforte-Royo
Joaquín Tomás-Sábado
Christian Villavicencio-Chávez
Vinita Mahtani-Chugani
Albert Balaguer
Càtedra WeCare 3er Workshop Internacional Càtedra WeCare
Introducción 1
o Creciente interés en analizar el deseo de adelantar la muerte
(DAM) en pacientes con procesos avanzados de enfermedad
o Fenómeno que parece afectar a un número considerable
de pacientes,
o Especialmente aquellos que se enfrentan a su final 1,2,3
1. Arnold EM. Factors that influence consideration of hastening death among people with life-threatening illnesses. Health Soc Work. 2004; 29: 17–26. 2. Grzybowska P, Finlay I. The incidence of suicide in palliative care patients. Palliat Med. 1997; 11: 313–6. 3. Hudson PL, Kristjanson LJ, Ashby M, Kelly B, Schofield P, et al. Desire for hastened death in patients with advanced disease and the evidence base of clinical guidelines: a systematic review. Palliat Med. 2006; 20: 693–701.
Hasta ahora, los estudios:
Introducción 2
o Etiología multi-factorial del DAM 4,5,6
o Estudios cuantitativos limitan su estudio a un número de variables4
o Difícil penetrar en la compleja realidad de la experiencia de un
un paciente4
4. Monforte-Royo C, Villavicencio-Chávez C, Tomás-Sábado J, Balaguer A. The wish to hasten death: A review of clinical studies. Psycho-Oncology. 2011; 20: 795–804.
5. Morita T, Tsunoda J, Inoue S, Chihara S (2000) An exploratory factor analysis of existential suffering in Japanese terminally ill cancer patients. Phychooncology. 2000; 9: 164–168.
6. Ganzini L, Goy ER, Miller LL, Harvath TA, Jackson A, et al. Nurses’ experiences with hospice patients who refuse food and fluids to hasten death. N Eng J Med. 2003; 349: 359–65.
Introducción 3
o Necesidad de abordar el significado del DAM desde la realidad
del paciente 4
o La perspectiva del paciente es esencial
o Estudios cualitativos ayudan a entender los fenómenos 7
o Varios estudios analizan el DAM desde una perspectiva cualitativa 8,9,10
4. Monforte-Royo C, Villavicencio-Chávez C, Tomás-Sábado J, Balaguer A. The wish to hasten death: A review of clinical studies. Psycho-Oncology. 2011; 20: 795–804.
7. Morse JM, Field PA (1995) Qualitative research methods for health professionals: Thousand Oaks, CA: Sage. 272 p. 8. Coyle N, Sculco L. Expressed desire for hastened death in seven patients living with advanced cancer: a phenomenologic inquiry. Oncol Nurs
Forum. 2004; 31: 699–709. 9. Lavery JV, Boyle J, Dickens BM, Maclean H, Singer PA. Origins of the desire for euthanasia and assisted suicide in people with HIV-1 or AIDS: a
qualitative study. Lancet. 2001; 358: 362–367. 10. Mak YY, Elwyn G. Voices of the terminally ill: uncovering the meaning of desire for euthanasia. Palliat Med. 2005; 19: 343–50.
Objetivo
Analizar, a través de una revisión sistemática de
Estudios cualitativos primarios, el significado y
motivaciones del DAM en pacientes con
enfermedad avanzada
Diseño
Método
Revisión sistemática y Síntesis Interpretativa siguiendo
el método meta-etnográfico de Noblit & Hare15
15. Noblit G, Hare R (1988) Meta-ethnography: Sinthesizing qualitative studies Newbury Park: Sage.
Método
CRITERIOS DE INCLUSION
CRITERIOS DE EXCLUSION
O Estudios cualitativos primarios O Estudios cnetrados en WTHD O En pacientes con enfermedad
avanzada O Desde la perspectiva o experiencia
del paciente O Estudios de Mixed-Methods O No límite temporal o de idioma
O Estudios en muestras pediátricas
O Estudios cualitativos, pero sin análisis de datos cualitativo
# Bibliographic search strategy 1. Desire to hasten death/
2. Wish to hasten death/
3. Euthanasia/
4. Assisted Suicide/
5. Decisions end of life/
6. 1 or 2 or 3 or 4 or 5
7. Chronic disease/
8. Chronic illness/
9. Advanced disease/
10. Advanced illness/
11. Advanced cancer/
12. 7 or 8 or 9 or 10 or 11
13. 6 and 12
14. Qualitative studies/ or qualitative
15. Interviews/ or interview*
16. Case stud*
17. Case studies/ or case study
18. 14 or 15 or 16 or 17
19. 13 and 18
20. Qualitative Studies/
21. Phenomenological Research/
22. Ethnographic Research/
23. Ethnonursing Research/
24. Grounded Theory/
25. Exp qualitative validity/
26. Purposive Sample/
27. Exp observational method/
28. Content analysis/ or thematicanalysis/
29. Constant comparative method/
30. Field studies/
31. Theoretical sample/
32. Discourse analysis/
33. Focus groups/
34. Phenomenology/ or ethnography/ or ethnological research.mp. [mp=
title, subject heading, abstract, instrumentation]
35. (qualitative or phenomenol* or ethnon*).tw
36. (grounded adj (theor* or study or studies or research)).tw.
37. (constant adj (comparative or comparison)).tw.
38. (purpos* adj sampl*).tw.
39. (focus adj group*).tw.
40. (emic or etic or hermeneutic* or heuristic or semiotics).tw.
41. (data adj saturat*).tw.
42. (participant adj observ*).tw.
43. (Heidegger* or colaizzi* or spiegelberg*).tw.
44. (van adj manen*).tw.
45. (van adj kaam*).tw.
46. (merleau adj ponty*).tw.
47. (Husserl* or giorgi*).tw.
48. (field adj (study or studies or research)).tw.
49. (lived adj experience*).tw.
50. Narrative analisis.tw.
51. Discourse* analysis.tw.
52. Human science.tw.
53. Life experiences/
54. Convenience sample/
55. Exp cluster sample/
56. Or/14-55
57. 6 and 56
58. 12 or 57
Key to abbreviations as used in Medline (PubMed):
*, truncation; tw, text word; adj, adjective
Método: Estrategia de Búsqueda
Método: Selección de estudios
PubMed
n= 62
CINALH
n=5
PsychINFO
n=29
ISI web
n=103
Cochrane
Library n=0
Other sources
n=26
Excluded
duplicates
n=34
Potentially relevant studies based on keywords searches in databases
n= 191
Formulate focused question / Database search
Potentially relevant studies
retrieved for evaluation of title
n= 153
Potentially relevant studies
retrieved for evaluation of
abstract n= 38
Studies retrieved for more detailed
evaluation of full text n=16
Included in systematic
review n=7
Studies excluded because of
method, participants or topic
n= 184
• Lavery (2001) Canadá
• Kelly (2002) Australia
• Coyle (2004) USA
• Mak (2005) China
• Pearlman (2005) USA
• Schroepfer (2006) USA
• Nissim (2009) Canadá
Quality Assessment: CASP
Qualitative Studies Included (n=7)
Método: descripción de los estudios
1. Research Question Define inclusion criteria
2. Systematic Review Process
3. Reading and rereading studies
Identify primary themes and concepts Identify secondary themes
4. Determining how the studies are related
5. Translating the studies into one another
6. Synthetising translations
7. Expressing the synthesis
Comparing themes and identifying key themes
Método de Síntesis
Meta-ethnografía de
Noblit & Hare15
Reciprocal Translations
“Line of argument” synthesis
15. Noblit G, Hare R (1988) Meta-ethnography: Sinthesizing qualitative studies Newbury Park: Sage.
Traducciones recíprocas
o Identificar temas clave
o Comparación constante de los temas
clave en los 7 estudios
o Hallar las categorías finales
Estudios fueron directamente comparados entre ellos
Traducciones recíprocas: método
aplicado
Resultados
Study Reference
Categories/Subcategories Kelly Coyle Lavery Mak Nissim Pearlman Schroepfer
1. Wish to hasten death in response to physical-
psychological-spiritual Suffering
Yes
Yes
Yes
Yes
Yes
Yes
Yes
2. Loss of Self:
Loss of function Yes Yes Yes Yes Yes Yes Yes
Loss of control Yes Yes Yes Yes Yes Yes Yes
Sense of 'loss of dignity' -- Yes Yes Yes Yes Yes --
Loss of meaning Yes Yes -- -- Yes Yes Yes
3. Fear:
Fear to dying process Yes Yes Yes Yes Yes Yes Yes
Fear to imminent death Yes Yes -- Yes -- -- Yes
4. WTHD: as a desire to live but 'not in this way'; as a
sort of 'cry for help'
--
Yes
Yes
Yes
Yes
Yes
Yes
5. WTHD: as a way of ending suffering
Yes Yes Yes Yes Yes Yes Yes
6. WTHD: a kind of control of my life 'to have an ace
up one's sleeve'
--
Yes
Yes
--
Yes
Yes
Yes
1.Lavery JV, Boyle J, Dickens BM, Maclean H, Singer PA. Origins of the desire for euthanasia and assisted suicide in people with HIV-1 or AIDS: a qualitative study. Lancet. 2001; 358:362-7. 2. Kelly B, Burnett P, Pelusi D, Badger S, Varghese F, et al. Terminally ill cancer patients' wish to hasten death. Palliat Med. 2002;16:339-45 3. Coyle N, Sculco L. Expressed desire for hastened death in seven patients living with advanced cancer: a phenomenologic inquiry. Oncol Nurs Forum. 2004; 31:699-709 4. Mak YY, Elwyn G. Voices of the terminally ill: uncovering the meaning of desire for euthanasia. Palliat Med. 2005; 19: 343-50 5. Pearlman RA, Hsu C, Starks H, Back AL, Gordon JR, et al. Motivations for physician-assisted suicide. J Gen Intern Med. 2005; 20: 234-9 6. Schroepfer TA. Mind frames towards dying and factors motivating their adoption by terminally ill elders. J Gerontol. 2006; 61: S129-139 7. Nissim R, Gagliese L, Rodin G. The desire for hastened death in individuals with advanced cancer: a longitudinal qualitative study. Soc Sci Med. 2009; 69: 165-71
Temas identificados en cada estudio
1. Research Question Define inclusion criteria
2. Systematic Review Process
3. Reading and rereading studies
Identify primary themes and concepts Identify secondary themes
4. Determining how the studies are related
5. Translating the studies into one another
6. Synthetising translations
7. Expressing the synthesis
Comparing themes and identifying key themes
Método de Síntesis:
Meta-ethnografía de
Noblit & Hare15
Reciprocal Translations
“Line of argument” synthesis
15. Noblit G, Hare R (1988) Meta-ethnography: Sinthesizing qualitative studies Newbury Park: Sage.
Línea de argumentación
Síntesis de las
traducciones
Reconceptualización de
los hallazgos
Comparación de las
categorías emergentes
Segundo nivel de
comparaciones constantes
Síntesis y modelo
explicativo
Resultados
Fear
WTHD A KIND OF CONTROL, ´To have an ace up one’s sleeve´
WTHD as a way of ending
suffering
WTHD: as a desire to live but `not in this way´; WTHD as a
sort of `cry for help´
Fear to dying Fear to inminent
death
E
M
O
T
I
O
N
A
L
D
I
S
T
R
E
S
S
Physical – Psychological - Spiritual suffering Wish to hasten death in response to suffering
Loss of
self
Loss of meaning
Loss of function
Loss of control
Sense of `loss of dignity´
Hopelessness
MODELO EXPLICATIVO: DAM en pacientes con enfermedad avanzada
Resultados
Síntesis de estudios cualitativos (meta-etnografía):
A) WTHD es un fenómeno reactivo (respuesta a un sufrimiento
multidimensional)
B) WTHD tiene diferentes significados (no => genuino deseo de morir):
o Respuesta a sufrimineto físico/psicológico / espiritual/ existencial
o Pérdida de sí mismo (incluye pérdida de sentido de la vida)
o Miedo a morir
o Un medio para acabar con el sufrimiento
o Deseo de vivir, pero no de este modo
o Una forma de control sobre la vida (“un por si a caso”)
C) Estos significados, tienen una relación causal con el WTHD
Limitaciones
o La depresión no se exploró en todos los estudios
incluidos en la revisión sistemática
o Estrategia de búsqueda
o Diferentes diseños de los estudios cualitativos primarios
¿Qué aprendimos?
o La síntesis aportó un modelo explicativo del WTHD, un patrón de
respuesta común en pacientes de diferentes países y sistemas
sanitarios
o Pacientes que expresaron WTHD muestran rasgos comunes en
vivencia de la enfermedad
o La síntesis identificó elementos clave para comprender las
necesidades de estos pacientes y desarrollar planes de atención
personalizada
o Se necesitan estudios para explorar el sentido de la vida y su
relación en el WTHD
Método: Estrategia de Búsqueda
# Bibliographic search strategy WTHD
Topic
1. Desire to hasten death/
2. Wish to hasten death/
3. Euthanasia/
4. Assisted Suicide/
5. Decisions end of life/
6. Wish to die
7. #1 or #2 or #3 or #4 or #5 or #6
8. Palliative care
9. End of life care
10. #8 or #9
11. Chronic disease/
12. Chronic illness/
13. Advanced disease/
14. Advanced illness/
15. Advanced cancer/
16. Life limiting illness
17. Terminally ill
18. Life threatening illness
19. Life threatening condition
20. #11 or #12 or #13 or #14 or #15 or
#16 or #17 or #18 or #19
21. #7 and #10 and #20
22. “semi-structured” [TIAB]
23. Semistructured [TIAB]
24. unstructured[TIAB]
25. informal[TIAB]
26. “in-depth”[TIAB]
27. indepth[TIAB]
28. “face-to-face”[TIAB]
29. structured[TIAB]
30. guide[TIAB
31. guides[TIAB]
32. #22 or #23 or #24 or #25 or #26 or #27
or #28 or #29 or #30 or #31
33. interview*[TIAB]
34. discussion*[TIAB]
35. questionnaire*[TIAB]
36. #33 or #34 or #35
37. #32 AND #36
38. “focus group”[TIAB]
39. “focus groups”[TIAB]
40. qualitative[TIAB]
41. ethnograph*[TIAB]
42. fieldwork[TIAB]
43. “field work”[TIAB]
44. “key informant”[TIAB]
45. #37 or #38 or #39 or #40 or #41 or #42
or #43
46. #37 or #45
47. “interviews as topic”[Mesh]
48. “focus groups”[Mesh]
49. narration[Mesh]
50. qualitative research[Mesh]
51. "personal narratives as topic"[Mesh]
52. #47 or #48 or #49 or #50 or #51
53. #46 or #52
Setting
Population
Filtro
cualitativo
Key to abbreviations as used in Medline (PubMed):
*, truncation; tw, text word; adj, adjective
Método: Selección de estudios
PubMed
n= 185
CINALH
n=174
PsychINFO
n=?
ISI web
n=878 Other sources
n=6
Excluded
duplicates
n=304
Potentially relevant studies based on keywords searches in databases
n= 1342
Formulate focused question / Database search
Potentially relevant studies
retrieved for evaluation of title
n= 1038
Potentially relevant studies
retrieved for evaluation of
abstract n= 53
Studies retrieved for more detailed
evaluation of full text n=23
Included in systematic
review n=15
Studies excluded because of
method, participants or topic
n= 1023
• Nilmanat (2010) Tailandia
• Stiel (2010) Alemania
• Dees (2011) Holanda
• Broom (2012) Australia
• Ohnsorge (2012) Suiza
• Ohnsorge (2014) Suiza
• Ohnsorge (2014) Suiza
• Pestinger (2015) Alemania
Quality Assessment: CASP
Qualitative Studies Included (n=8)
Método: descripción de los estudios
Análisis preliminar
Study Reference
Categories/Subcategories Nilmanat Stiel Dees Broom Ohnsorge Ohnsorge Ohnsorge
Pestinger
1. Wish to hasten death in response to
physical-psychological-spiritual Suffering
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
2. Loss of Self:
Loss of function Yes Yes Yes Yes Yes Yes Yes Yes
Loss of control Yes Yes Yes Yes Yes Yes Yes Yes
Sense of 'loss of dignity' Yes Yes Yes Yes Yes Yes Yes --
Loss of meaning -- Yes Yes -- Yes Yes Yes Yes
3. Fear:
Fear to dying process -- Yes Yes -- Yes Yes Yes Yes
Fear to imminent death -- Yes Yes Yes -- -- -- Yes
4. WTHD: as a desire to live but 'not in
this way'; as a sort of 'cry for help'
--
Yes
Yes
Yes
Yes
Yes
Yes
Yes
5. WTHD: as a way of ending suffering
Yes Yes Yes Yes Yes Yes Yes Yes
6. WTHD: a kind of control of my life 'to
have an ace up one's sleeve'
--
Yes
Yes
--
Yes
Yes
Yes
Yes